BoyIowa Posted August 24, 2012 Report Share Posted August 24, 2012 Those doctors/nurses at the Rothman Center are saints!! We were in Florida yesterday for a very, very long day of questions and forms and tests for the baseline visit for the abx study. My dd has been stressing about this visit for some time, because she knew they wanted blood and she HATES to give it. Throughout the day we made several attempts to collect some with coaxing and bribing, but she wasn't having any of it!! They even put lidocaine on her arm so it was numb. At one point I thought Dr. Mutch had her convinced. I would like to apologize to anyone that was there yesterday who had to hear the scream. It took 2 doctors and I to hold her while the nurse drew her blood. She screamed like we were sawing off her arm. During the scream, I kept reassuring the nurse that she was doing a good job, because I could see her shaking a bit as she filled the tubes. Dr Murphy came in to see if she could offer any assistance. I asked Dr. Murphy later to tell the nurse that she did a good job under all the stress. Good news, we are in the study. Told that dd PANDAS/PANS could have been brought on by any one of the triggers [Lyme, strep, Myco P, H1N1 (we think she had)] as dd has history of exposure. Bad news, we have to do this every 2 weeks, but the visits should be much shorter. Dr. Murphy said that she was going to try and draw blood every other visit because of the difficulty. As promised dd did get to jump on the hotel room beds, and got her dinner choice - bacon and cheese pizza. Maybe next time we will see those dolphins that I promised. Link to comment Share on other sites More sharing options...
Dedee Posted August 24, 2012 Report Share Posted August 24, 2012 I am so glad you had a productive trip. You are right, everyone there is top of the line. Don't feel bad about your daughter. My daughter acted the same way a few months ago over a throat swab. She even tried to run out of the building. I'm glad you have gotten into the study. I imagine you will get a lot of support from the staff and Dr. M. Hopefully you will see some improvements soon. Do you know what antibiotic she is on? Please keep us updated on her progress. Dedee Link to comment Share on other sites More sharing options...
BoyIowa Posted August 24, 2012 Author Report Share Posted August 24, 2012 At one point my dd clung to a cabinet and a chair in the office. I told her she better not hit anyone when we let go of her - we were safe. The trial uses Zithromax, but dd has 50/50 shot of abx the first 4-weeks (blind portion). Everyone gets abx the next 8 weeks. They are running a lot of tests. Dr. M even recommended a couple of tests that are not part of he study. Less than 10 in the study at this point. Link to comment Share on other sites More sharing options...
airial95 Posted August 24, 2012 Report Share Posted August 24, 2012 Her fellows are very good about responding to email too. They've always responded to us within 24 hours Link to comment Share on other sites More sharing options...
norcalmom Posted August 24, 2012 Report Share Posted August 24, 2012 Will they be drawing blood every 2 weeks??? Do you know what tests they will be running? Link to comment Share on other sites More sharing options...
BoyIowa Posted August 25, 2012 Author Report Share Posted August 25, 2012 Not sure exactly about all of them. I remember that Dr. Murphy said that she was going to test for Myco P levels - had just positive/negative done before. They are supposed to draw blood every 2 weeks, but with the experience we had, she said that they would go 4. The 2 week test was supposed to be for liver function - they said they could do it at 4. Link to comment Share on other sites More sharing options...
Jtsmama Posted September 10, 2012 Report Share Posted September 10, 2012 Anyone know the dosage in the Zith study? Read it once, can't seem to find it again. My dd14 is on 250 mg, thought I read 500 was recommended. Link to comment Share on other sites More sharing options...
BoyIowa Posted September 10, 2012 Author Report Share Posted September 10, 2012 From my study info: " The dosage of azithromycin will range from 9-12 mg/kg once daily." Link to comment Share on other sites More sharing options...
PowPow Posted September 10, 2012 Report Share Posted September 10, 2012 usf , not part of the study, increased my child dose to 500. she is full size 13yo. had.been at 250mg. our pandas doc agreed and has kept it at 500mg QD Link to comment Share on other sites More sharing options...
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